Thursday, June 30, 2011

Note: this post is also appearing on Canada.com ... please visit and comment there if you have a mind to. As it is up there now, I'm posting right away ... this IS however my post for Canada Day (July 1st, for those who don't know.) Belinda Burston, who you will know from her comments and her blog also has a post on Canada.com, so drop by and check out her post on how she came to be a Canadian.

Grandma's Trust

I was having a pee.

Thinking about my grandmother.

Thinking about my country.

We'd driven almost 300 kilometres through the wilderness of Northern British Columbia. That is to say, it was a long pee.

My grandmother was born in Canada in the late 1800's. In all ways she was a remarkable woman. She made the hard life of poverty and subsistence farming into a warm life of laughter, card games and home fried doughnuts. She was a woman that I was always close to. I think I actually trusted her love of me.

One summer I was staying with her in the old homestead. A barnboard shack on a gravel road. The family dreams lay like rusted dinosaurs round the property. Threshing machines that never threshed and tractors that never left a track. Big, hulks, that frightened and fascinated all the grandchildren. But inside those oddly clean sparkling windows, the light was warm. Inside the doors, the spirit welcoming. That summer, I asked her a question. We had been studying in school the history of Canada. I had learned, with a shock, that at one time in Canada, in CANADA, women were not legally persons, that women could not vote. I had been stunned by this information.

I asked her to tell me about those days. She did. In stark detail. She said, 'If you are old enough to ask the question, you are old enough to hear the answer.'

She had married lucky, she said. A comment that might have seemed at odds with the surroundings of a life without riches. Water was pumped into the sink with an old hand pump, towels were stuffed around doors for insulation. But her husband, she told me, was never a violent man. He had loved her gently and respected her unceasingly. Other woman, many women, were not lucky. Their men, abetted by the society in which they lived, treated their women with less care than the cattle in their barns.

Women of her class, she said, never thought about the vote. They thought about survival. I asked her, hushed by her tone and battered by her honesty, how she coped.

She gave an odd answer: "Canada."

I asked her what she meant. She said that she always trusted that her country would get it right. That a young country would grow up. That one day a woman would be protected by law, not luck.

"Trust this country," she said, "it wills to grow and change."

It will not surprise you to know that my grandmother was the first to know of my sexuality. A woman of deep faith, she felt that the call to love me was stronger than the call to damn me. So she did. I was her gay grandson, that was that.

Once when telling her that I feared for my job, for my safety if others found out about who, and what, i was. After listening to me and consoling me, she said, "Trust Canada. Give your country time to grow. It will. It will because it wants to."

And it did.

Years later, I am driving long distances along a highway I had travelled in my youth. In those days the rest stops were barely more than 'intensely rustic'. I suddenly had to pee. We watched for a rest stop. Being a wheelchair user now, rushing into the bushes is out of the question. I was terrified of what I'd find. Those rest stops in my memory were forbidding for those who walked. But we pulled into the stop and saw, proudly displayed, the blue wheelchair guy. I rolled easily to the door, and had the dignity of travelling in dry pants.

Wednesday, June 29, 2011

I'm going to have to postpone the book club until next week. I've a lot to do at work and over estimated my ability to get things done after a long lecture tour and a loss of huge magnitude. I apologize but promise that I will have it done early next week.

On Monday we drove from Castlegar back to Vancouver where we would fly from the next day. We drove through the Rockies and on one particular turn I was struck with a memory. The first time I drove that route was in my Karmann Ghia. My brother and mother were in the other car headed west. We were moving to Campbell River to be near where my father was working. I had lagged behind letting the mountain curves hide me from view. I was just starting to smoke and wanted to light one up without being seen.

Now, of course, I know that smokers can't really hide smoking. But, I was young and still getting a 'buzz' from the cigarette. Driving mountain roads while slightly light headed didn't strike me, then, as simply stupid. The memory of slowing down and lighting the cigarette was a powerful one. Here I was years later driving that same route, in vastly changed circumstances.

Then, I faced an uncertain future. I'd been told, and told, and told again, that I wouldn't amount to much. That I was fat and ugly and virtually unlovable. That I was stupid, clumbsy and could only aspire to oafishness. Then, as I drove into the next part of my life, I felt little in the way of hope. I endured. I didn't look forward to much, tomorrow's certain humiliation wasn't something to anticipate with relish. Then, I didn't know what to expect but I thought that I did.

That 'then' was mere weeks before I met Joe. That 'then' was lived without knowing that there was someone in the world who would see me as something worth time and worth energy and worth love. That 'then' is buried under a history of wonderful 'nows'. The 'now' 42 years ago when we pledged our lives together was a wonderful one. The 'now' when we lived in a tent for a summer while working at the mill, ah, that was a wonderful 'now' too. The 'now' where we first, openly and with great fear, marched for our rights as a couple, yep that was a great 'now' too.

You see, I believe that the past is simply a collection of 'nows' ... not a dusty bin of 'thens'.

So the 'now' I experienced in driving home from Castlegar, after driving nearly 6000 kilometers over the province of British Columbia, staying in more than a dozen hotels, lecturing to scads of people, selling books, signing books, chatting at breaks, answering questions, asking questions, celebrating and crying, that was a pretty terrific 'now'. It was terrific because it feels good to finish what you start. It feels good to know that you've done your best and have real hope that it mattered. But it was also a wonderful 'now' because when I went from the memory of a distant and dusty 'then' ... I realized that my 'nows' started with Joe. My 'thens' have ended. 'Then' I lived with despair. 'Now' I live with Joe.

Tuesday, June 28, 2011

We go home today. The plane will be a welcome sight. It's time. We had a terrific trip. Meeting old friends, making new, talking, laughing, eating. But three weeks is a long time to be away. Long enough for my world to change. But none of that here ... some highlights of the trip ... mostly frivolous ... not everything has to be shot full of meaning!

The most special moment of the trip:

Meeting our niece's newly adopted children - new members of the family - and hearing them say 'Uncle Joe' in English.

The best breakfast of the trip:

Chatting with someone we once knew, will know again, and plotting and planning to fix the world's problems.

The most memorable moment of our trip:

A young man with a disability hollering out 'Amen!' when I lectured about the wrongs of bullying.

The best decision we made about the trip:

Bringing along the elephant feet and being able to sit on hotel furniture.

The most amazing food:

A huge meal from the Four Stones Vegetarian restaurant in Richmond.

The biggest splurge:

A new and very handsome watch with a face big enough for me to see.

The oddest shopping:

Shopping for a new dress for Ruby to wear on gay pride.

The oddest looks we got;

Talking about buying a new dress for Ruby for gay pride - horror would best describe it.

The best tea:

In Willow Point with Joe's sister and another niece.

The best conversation:

In Willow Point, it must have been because some people came from outside so that they could listen better.

Monday, June 27, 2011

The ramp up to the museum was long, tortuously steep with many sharp corners. Plants, huge plants, grew on either side of the bottom part of the ramp and narrowed the passageway significantly. It was impossible to push without grabbing on to branches and pulling leaves off. But we made it to the top. Joe breathing hard, me with sore shoulders. When we got in and were greeted in the reception area, I said, 'That's quite the ramp you've got out there.' I was smiling and my tone was light. I didn't want a confrontation. I didn't want a discussion. I just wanted to indicate that the ramp was a difficult one.

She looked at me, not with hostility exactly, but with, maybe, forbearance, and said, 'You should be grateful we've got a ramp at all.'

I said, still not wanting a confrontation, 'I refuse to be grateful for what others take for granted.'

She said, 'I see,' but I knew she didn't.

There is an emerging pattern in my interactions with the 'outer world' in the last few months. A pattern that I've experienced before and that, because of that, I should have recognized immediately. Let me give you another example.

We were staying at a kind of resort hotel. I was to speak at a conference there the next day. The resort was spread out over several acres with various forms of hostelry, cottages, bungalows, small clusters of rooms, all gathered around a main building with reception and a restaurant. The one disabled room, that in itself tells you a lot, was down a steep hill from the main building. The room itself was accessible but the means to get to it was barely so. The car was parked on a gravel parking lot, there was no paved path from the disabled parking to the sidewalk and no cut curb from the gravel to the sidewalk. OK. We managed. With great difficulty.

Joe informed me that we were going to also have difficulty in the morning because the restaurant itself was not accessible, and the way from the restaurant to the lecture hall was impossibly steep and far too dangerous to get there manually. We drove around, found the hall, figured a way to get me into it and then headed to the room. By now we'd been in the car for hours and were very tired.

Once in the room, we called over for room service. We placed the order. Then five minutes later we got called back from an embarrassed receptionist to tell us that the restaurant was closed that day. Now we are in a room that I'm not leaving again until it's time to go and lecture. Joe has cracked open a beer and is half way through it. Now we are told that we can't get food. I demanded to speak to someone.

I spoke to a manager and outlined our difficulties. Including not being able to get into the restaurant, the one that was now closed, for breakfast and the inaccessibility of the entire venue. He said that if I could get myself to the lecture hall in the morning he'd have a staff bring me breakfast from the restaurant. He also said that he would arrange for us to get a pizza if we'd like. The resort was far, far, far, from any town and the restaurant was closed, I didn't know how he'd manage but I thanked him for it and placed the order.

Then he wanted to talk about my needs for the lecture the next day. I don't PowerPoint. I don't overhead. I don't use anything but a microphone. I said, 'I'm fairly low maintenance.' He said, keeping anger under control, 'It doesn't seem that way to me.' I told him that I was astonished that he seemed to think that the desire to be able to get into my room, get into his restaurant, get into the lecture hall and get fed in a resort was exceptional. The discussion devolved from there. Let me just say that we checked the pizza over very carefully looking for evidence of spit.

Why do people think that wanting the same thing as other people means wanting 'special rights'. I never understood why people believed that gay people wanted 'special rights' or black people wanted 'special rights' ... when all that was ever asked for was what the majority expected as their due. Now here I am a disabled guy being told that access should be subject to my gratitude. That I am difficult because I want to eat breakfast in the restaurant of the hotel I'm staying in. The irony is that it takes 'special effort' to accommodate me by having a staff provide 'special service' by bringing me breakfast in the lecture hall - that's all true, but my 'special need' is caused by their denial of 'typical expectations.' What other person in the hotel was denied access to the restaurant in the first place.

A museum volunteer wants me to be grateful for access that is dangerous, difficult and demanding.

A manager wants me to understand that basic expectations for people without disabilities are exceptional demands for those with them.

I'm supposed to be thrilled with the barest minimum, the crumb from Christ's table, while those with value and privilege sniff and roll their eyes at the mere idea of providing 'special rights' for 'demanding minorities'.

What I see as privilege, they see as fair due.

What I see as basic rights, they see as unfair demands.

You know what?

I know why some are angry.

My winning the freedom to love limits their freedom to hate.

My winning the freedom of access limits their freedom to exclude.

My winning the freedom to participate limits their freedom to discriminate.

And that's OK by me.

So, until the battles are all won, I need three things.

Access.

Respect.

And the restraint not to tell people to 'f#ck off' several times a day.

Sunday, June 26, 2011

So often when travelling to lecture I get into heated debates and discussions about the issue of community. I see the community differently than many others in 'the movement' .. but aside from that ... the issue is the question as to the existence of the disability community or the appropriateness of even the concept of a community comprised of those with disabilities. Now, it's important to remember it's almost invariably non-disabled people explaining to me, a disabled person, how 'community' means everything but associations with others of 'like kind.'

Now I get the concepts of forced segregation and forced congregation. I do. It was wrong. They seem to not be able to understand the concepts of forced integration and forced inclusion. To me, the argument should never involve even the mention of 'segregation' or 'integration' it should always and only be about 'force'. Telling a person with a disability that hanging around with others with disabilities is wrong and that the person should aspire to typical relationships is, to me, tantamount to psychological abuse. It's teaching that 'the norm' trumps 'the different' and that someone gets value from the gang with which they hang, rather than from membership in the human community. It even suggests, slightly, that some people are just more 'human' than others. Yikes.

Me? I value the disability community in the same way as I value the gay community in the same way I value the community of faith. They are all communities to which I have entry. I do not wish to confine myself to one large, huge community. In fact, the concept of community as spoken about in the community living movement terrifies me. I think it was conceived and the lionized by middle class white thin privileged people. That community, I flee from. I see it as violent toward, as biased against, as bigoted of, and as greeting difference with intolerance. Yep, you may want to go to those parties. I don't. I'll stick to my little communities. The ones to which I belong and where welcome greets me at the door.

A few days ago I was rolling into a store and a woman in a power wheelchair stopped at the sight of me. She said to her friend, excitedly, 'Look, another one.' She came on over and we chatted. She was a bright, funny, elderly woman who said that she was always the only wheelchair user in the store. My appearance was almost magical to her. She said that sometimes she just craves the sight of others with disabilities, to remember that she's not alone in a world of others. The fellow with her obviously disapproved of her comments, non-disabled people sometimes don't get that sometimes they just aren't enough.

Later that same day I was rolling back to the hotel and a young and pretty woman was wheeling towards me. The sidewalk was narrow and the drop off steep. I smiled and called out, 'Wanna play chicken?' She smiled back and answered, 'I'd have the softer landing!' We howled. We stopped and talked ... about gloves. She uses a different style than I do and we talked about them. We laughed about how we get asked all the times why we wear gloves. She said, 'I used to say, 'Well you wear shoes don't you?'' But she stopped that because the confusion often caused minds to misfire dangerously. So a few more comments about us-world as compared to them-world and we were off.

Kinship.

Automatic kinship.

Community. I love the disabled community. I love those who have 'come out' as disabled, identify with a disability world view, and who see allies where others see difference. I love those accidental meetings. Meetings that reassure me that because my experiences are not unique, I am not alone.

That's what community is for.

Perhaps the strong drive to forbid people with intellectual disabilities the right to respectfully choose to hang with each other is our way of keeping them alone. Keeping them from talking. Because maybe we fear if they did, they'd discover something. Community. And the power that comes from common goals. Perhaps what we are really afraid of is, revolution.

Saturday, June 25, 2011

I am away. Wishing I was there. Knowing that, even as I tried to get back, she would have me stay, she would have me do what I came here to do. Manuela was remarkably unsentimental about things that needed to be done. You did them. You did them well. You didn't moan about it. I fail on a couple of those counts fairly regularly. She seldom did.

This is not going to be a tribute blog. I plan on writing something, nearer the time of Vita's memorial service - where I will have the honour to speak of her life and work. Then, as that day nears, I plan on taking some quiet time of reflection and write about the woman who became much more than my boss, she became both my mentor and my friend.

Yesterday, Joe and I went to the museum here in Kelowna, I rolled around alone looking at the exhibits. I had an odd feeling. Like I'd spent the last several days, walking around the museum of memories I have with Manuela. Fragments of images flash on the screen of my mind. Images of her living largely. Laughing loudly. Raging injustices. Thoughtfully pondering. Eagerly questioning. Maybe it was the Italian heritage, but living with emotion, living with passion, was the way she spent her days. It could be exhausting.

We travelled well together. All three of us talk. Well, Joe is a little quieter. But we'd drive the drive from Toronto to New York City and back without a quiet moment. On those drives we'd dream big dreams, plot out big plans. She was a someone who did things, big things. She made things happen, not magically willing the world to change, but actually working to make a difference.

These memories, in my little museum in my mind, are not dusty. They still have the fresh scent of recency on them. I will them not to diminish with time. I will them not to grow dusty.

Ruby wrote the card that Mike and family sent with their flowers. It said: 'My name is Ruby, I am nearly five years old. I liked it when I came to your place and you showed me how to catch frogs. You told me that girls could catch as many frogs as boys. I caught more frogs than my Daddy did. I will miss you this summer.'

Well, Manuela convinced me that I could catch frogs too ... different frogs than Ruby caught ... and I'll miss her all the summers of my life too.

Wednesday, June 22, 2011

Manuela Dalla Nora, my boss, my mentor and my friend, died suddenly on Monday night. I want to write her a tribute but right now I want to just be with my grief and be with others affected by this news. I will miss her deeply. I grieve the loss of her in my life and in my future.

Tuesday, June 21, 2011

We found ourselves in a little market. We had an hour or so to kill before I was to speak for a few minutes as part of a celebration book launch. I hadn't planned on anything to say as it was very last minute for me to be there at all. The book is about informal safeguards in the community and how these kind of connections can keep people safer. So, I was thinking about the abuse prevention and bullying sessions I had done over the last few days. The thoughts were heavy and my spirit darkening.

As I turned the corner I found a little tiny package, cutely decorated, covered in Chinese characters. I picked it up to find that it contained bright pink cookies. Ruby loves pink. Ruby loves cookies. Suddenly, I was thinking about how excited she'd be to get a little gift. Actually several gifts in one. A bright and beautiful box. A mysterious box covered with little drawings and words written in big bold brushstrokes. And, of course, pink cookies.

I handed the box to Joe who looked at it, saw what it was and said, 'Ruby.'

I said, 'Yeah, Ruby.'

Quickly we made our way to the checkout to buy our little purchase and as we did so I called to arrange a time to talk with the kids the next day. We chatted as we walked over to where I was going to speak and agreed that we wouldn't tell Ruby that pink cookies had been bought for her. We'd wait and surprise her.

It's amazing isn't it?

Sometimes when life hands you lemons, you find pink cookies in a colourful box.

Monday, June 20, 2011

'Lecture Dave' has conversations with people, he exchanges ideas and opinions, he laughs and is included in the jokes. 'Lecture Dave' gets something that everyone expects, social inclusion. Sometimes the signal for inclusion is very simple - eye contact. Regular typical eye contact. Not staring. Not avoiding. Just a gaze held, a glance exchanged, a glimpse into the center. 'Lecture Dave' never realized that those moments of conversation when the eyes joined with the words in the creation of 'message' would become a valued rarity.

'FW Dave' doesn't get much eye contact. If Joe is with 'FW Dave', Joe gets the eyes while 'FW Dave' gets the chill. When 'FW Dave' insists on being spoken to directly, often eyes go a few inches above where contact would be made, like a can of peas on a shelf out of reach. Others may wish to have 'eyes in the back of their heads', 'FW Dave' seems to have them on the top of his.

Oddly, me, I, 'FW Dave' most of the time, have gotten used to this lack of contact, this tiny bit of social exclusion and it only became noticeable today. I'm in Prince George staying at the new Sandman Signature Hotel here. It's a really lovely place. First at checkout and then in Rockford the bar and restaurant which is attached to the hotel, the staff all looked at me while talking with me. Chatting with the bartender about tea, I love tea, he looked right at me as we spoke. Just like I used to get when I was a walker, just like I get when I'm 'Lecture Dave'. But here, in this context, I'm so used to conversing with the 'whites of their eyes' that I found it disconcerting.

It's stunning to me how quickly, after all I've only been disabled for four years, I've come used to social exclusion. How I've just, over time, adapted to existing without existing, speaking with a disembodied voice, having eyes that see but are not seen. I know at first I fought, fight after fight for the dignity of being present, fully present in my conversations. It was like I wore a tee shirt that said 'Gaze Rights Now!' But over time, bigger battles came along, or more precisely the battle for social inclusion for the end of social exclusion, seemed too big. It was easier to lobby for space to get into a store than it was for space to get into contact.

So, when the bartender, when the lobby clerk, looked at me as if I was real. I realized the importance of real eyes. I realized that the fight for access needs to always include the right to be included. I contact. Eye contact. Same difference.

Sunday, June 19, 2011

"You know what my Dad said?" he asked me. His eyes were still red from crying. During the training, when talking about feelings, he spoke about how sad he was that his Dad had died. "It broke my heart," he said, feeling the pain fresh with the telling. Teaching about feelings and about the right to feel is always heart wrenching for me. It is also so incredibly affirming. When speaking about emotions, it is clear how similar we all are, even with our differences. Humanity, at a feeling level, is humanity. So, when he spoke about his loss, all of us sat quiet and let him speak. Afterwards he came for a private word with me.

"When I was being bullied at school, I asked my Dad to come to the school and talk to the bullies, get them to stop," he said. I could see the memories of the long hallways filled with taunts, I could see fear visit him again as he spoke. "My Dad said that I had to learn to always walk proud, even when people were mean. He told me that he couldn't do it for me, that I had to do it myself."

"One day I told him that I wished that I didn't have Down Syndrome so the other kids would stop teasing me. My dad, he got really mad at me. He told me that I should never want to be someone else. He showed me how he and I both had the same colour of eyes, that meant that I was his son, that I was insulting him when I insulted me, his child." He seemed exhausted at the end of the story.

I asked him if what his Dad had said helped.

He nodded and said, 'When I got teased at school, I did what dad said and I walked proud. I had to say a prayer to God to help me."

I asked him if it worked, this prayer of his.

He said that it did but he doesn't say that prayer any more. "Now that my Dad is in heaven, if someone teases me I tell my Dad that I'm proud to be who I am. But I tell him that I'm mostly proud of having his eyes."

Saturday, June 18, 2011

One table. Just one. One table in a sea of tables is adapted for someone in a wheelchair. All the other tables have four chairs in four spaces, all bolted to the floor, all impossible to move. One table, right on the aisle, right where it should be, has one missing chair, perfect for easy access. There are, and I can be specific because I counted, 5 people sitting at the various, say, 100 tables. And one guy is sitting in the chair right across from the empty space.

We enter this picture looking round for the accessible table. The cashier pointed to the side of the restaurant where the table was. We both, Joe and I, see it immediately. At this point we didn't know there was just one space in the whole place. So we looked. He looked at us looking. He continued to sit there sipping on a coffee. Joe had a tray with food, I was beside him and we were looking.

I don't like asking people to move.

Joe hates asking people to move.

But, I wanted dinner.

So I approached the guy, who looked at me with a level gaze. I said, 'I'm really sorry to ask, but as this is the only table I can get at, I wonder if you'd mind moving.'

I got a reaction I didn't expect. He smiled, broadly, and said, without a hint of sarcasm, 'Absolutley, no problem.' He got his coffee and got up and moved a table back.

I rolled into place.

Joe sat across from me.

We ate in silence.

I fumed. And fumed. And fumed some more.

Why the hell did he wait for me to ask him? Why did I have to go through the inner turmoil that comes with asking things of others, the sense of belittlement that comes with needing a favour from another person?

I think I know.

But I want to hear your ideas first.

Why didn't he just get up and let us have the table? Why do you think he waited for, even wanted, me to ask?

Friday, June 17, 2011

On the ferry over, I sat and made a couple of changes to the 'Bullying workshop' that I do for people with disabilities. I wanted them to have a better understanding of the tools that they have for dealing with teasing and bullying. I was satisfied with what I had in the workshop for dealing with bullies in the community, but not so much with what I had for dealing with bullies in their peer group. Increasingly I have noticed that sometimes people with intellectual disabilities are unkind to each other, that sometimes the bullying comes from within. There is a different set of skills that they can use in this situation.

We did a variant of a role play I've used often.

Two people are out for a pizza and they only have enough for one pizza. The man wants pineapple on the pizza, she doesn't. I ask the group a question, 'he's the man, he's paying, shouldn't he just make her eat the pizza?' We discuss why it would be wrong for him to do that. They get it. Then we come up with a solution. Having the pizza half with pineapple and half without. Good, done, that's where I always stop.

I added a wrinkle. What if he says, 'no' to the compromise. What if he says, 'It's my money, I don't care what you want. You'll do what I say.'

What shocked me was that almost the entire group caved. They thought that 'oh, well, I guess she's got to eat the pineapples.'

Really.

REALLY.

I said, 'Hold on, she's got some tools here that she can use. What are they?

They fumbled around and finally someone said, not at all sure of himself, 'We'll, she's got her voice.'

Ah, ha, I said, 'You betcha she's got her voice, what other tools does she have?'

Someone else said, quizzically, 'Her temper?'

Yes! 'Anger serves a purpose some times. Other tools?'

A very bright young woman said, 'Her will.'

'OK, she's got voice, she's got temper, she's got will.' What can she do with those things? Suddenly they had solution, after solution, after solution.

Other role plays flew by, we did one on bullying at a workplace, one on bullying in a classroom ... they looked for tools in each situation and then came up with ideas.

Thursday, June 16, 2011

He just happened to come to one of my lectures here in B.C. One of his son's 'workers' mentioned the training and he decided, on a whim, to come along. He sat at a table a couple in with a few staff who seemed a little uncomfortable to have him there. Almost like he was invading their space, intruding on time that was theirs. One of the staff grimaced almost every single time I made a joke, or used any kind of 'cuss' word. She'd glance at him in fear and then at me in reproach. But this was a tough old goat and, as he wasn't worried about anyone's sensibility, laughed a lot during the whole thing.

At the end he stood in line to speak to me, brushing away the staff who suggested that they all head out for coffee. Finally he was standing in front of me, he glanced around, found a chair and sat down. 'I like to look a man in the eye,' he said by way of explanation. 'I heard all the others ahead of me asking you questions, I don't have a question. I want to tell you something.' I relaxed back in my chair. He had, in a simple gesture, honoured me, and I was ready to hear what he had to say.

'My son has Down Syndrome,' he says. 'He's lived with me his whole life.'

I nodded for him to continue.

'I was thinking while you were talking that maybe I made a mistake ...'

I started to say something reassuring, but he brushed away my attempt at kindness.

'No, no, let me say my piece.'

I nodded.

'He's a good boy, my son. All his life, I've taught him to do what he's told. Now, I think the problem is, he does what he is told. I didn't want him to be a problem to anyone, and the problem is, he'll never be a problem. I already see him get left behind because he'd never complain. Other kids, I call them all kids ...' he smiled looking at me, 'I'd call you a kid. Anyways, other kids who act up if they don't get what they want, well I see that they get what they want. My boy gets what's left over. He's a good boy. He does what he's told. I made a really big mistake.

I didn't know what to say. I said that.

'I'm not asking for any advice. I just want you to make sure you tell other parents, of young kids, not to do what I did. I raised a good boy, I should have raised a strong man.'

'It's not to late,' I said.

'I think it is,' he said.

'I beg to differ. Inside that boy, is the man he wants to be. Many of us, disabled or not, wait for the day our parents greet us as adults. When that happens it changes things. It's not to late to start.'

He paused to consider, and conceded to think about it by saying only, 'Maybe, maybe ...'

Wednesday, June 15, 2011

I was telling a story about being on the ferry over to the Island. We had gone up to go outside but I felt that the lip between inside and outside was simply to risky for me and the chair. Instead, Joe came down with me and I pointed that I was going to go to the Sitka coffee shop on board, pull up to a table and read, or gaze out the window, or both. We'd meet there later. Joe took the elevator back up, I rolled along the hallway to the table.

At the table, I reached over, picked up a chair and moved it over. I noticed the glances. The forever interest in how disabled people move into spaces made for others, is ever present. Chair moved, I move in, put on brakes, reach back behind me unhook the bag and pull it up and on to the table. I rummage in it and get my book. I think the eyes were disappointed that someone so different pulled out something so pedestrian as a book. So, show over, their eyes found other things to look at - though few chose one of the world's most spectacular views.

I alternated between reading a book that begins with pimps, prostitutes and rent boys in 70's London, and looking out at the ocean. That contrast was too much for even me, so I set the book down and simply enjoyed being on a boat and sailing over blue water. The time passed. The time passed. Joe's not back. This is odd. We always make a point of going back down to the car before others as it take time to get the chair into the car. Now they are making announcements to get off the boat. Still no Joe.

At this point in telling the story to my friend, she said, 'I'll bet you thought he'd abandoned you.' We both laughed. Then I had to say, in all honesty, 'No, I never thought that.'

Over the years as our relationship changed, as Joe had to add care providing into our way of relating to each other, I don't think, though I feared the loss of many things - I never fear the loss of him in my life. I'm very lucky. Very lucky. So I can laugh at the idea of loss because loss is simply absurd. Perhaps my positive attitude towards my disability, and this is a realization I'm writing and thinking for the first time ever, comes from his positive attitude towards my disability. Perhaps being around those who love 'you' not the physical you, not the financial you, not the social you, but 'you' is a powerfully positive experience.

So, by the time Joe showed up, as I knew he would, I'd figured he'd gotten disoriented on the boat. I'm the navigator in our relationship, and he'd lost his way. I guess it's poetic that I help him find his way, and he, most definitely helped me find mine.

Tuesday, June 14, 2011

This is a concept that explains a lot. It means that when you see something or hear something, you simply interpret it to fit into your world view. This is why a conservative and a liberal can watch the same news programme, hear the same story told in the same words and come away having heard two entirely different versions of events.

Many people hold the view that having a disability is living a life of constant tragedy, living a live perpetually in need of help, living a life where everything is made difficult.

Thus: the norm becomes the exceptional.

Today I was on the BC Ferry from Vancouver to Nanaimo heading north for a quick visit with family. We were on an early boat and lined up for breakfast at the on-board cafe. We'd placed our orders, Joe was waiting for the food to be delivered. I scooted on ahead to get us some tea. I picked up a cup, which was admittedly a long reach, and as I was about to set it down it slipped from my grip. The noise it made was disproportionate to the actual calamity.

The cashier, who I had notice watching me carefully as I was readying to make tea, leapt up at the sound of the dropping cup, a cup that did not break because it did not fall far. She rushed over and offered help. There was a desperation in her voice that would have been amusing if it wasn't so annoying. I told her I was fine. She insisted on helping. I refused, firmly. She practically begged to help. It was as if she expected my every move to end in disaster. after all, my life was a disaster, wouldn't everything else be an extension of that?

Now, let's be clear, I did not drop the cup because I was disabled, I dropped the cup because people sometimes drop cups and I am, last time I looked, most decidedly a member of the 'people species'. So, however, she conceptualized disability, jumped in and confirmatory bias took over. She couldn't see just a guy in a line up having a cup slip out of his hand. Instead she saw 'disability' as the root cause of every thing that might go wrong in my life. No wonder that people fear disability when they attribute regular human misfortune, accident and mishap as due to 'disability'. Most of what happens to disabled people happens to regular folks too ... except when regular folks drop cups, they are left to manage capably on their own because dropping a cup is no big deal. When you are normal, all things you do fall into the category of normal experiences. When you are 'deviant' or 'different' then all things, otherwise normal, become somehow tragic and kind of pathetic.

Confirmatory bias, is what it is ... bias.

Freud might have said, sometimes, a dropped cup is just a dropped cup.

Monday, June 13, 2011

We had stopped for a cup of tea on a busy Vancouver street. It was a bit cool, a bit damp and a bit expensive. But the tea was hot and the street was busy. It was the perfect perfect stop for a couple of people watchers. Joe wanted to bet that by the end of tea, I'd have an idea for a blog post. I refused the bet. I'm glad I did.

I noticed them long before I saw them clearly. Two boys, same height, same age, walking down the street. They were, oddly as it turns out, noticeable because of their difference. One walked along looking up, fully engaged with being out. The other walked with his head down, seemingly disassociated with where he was and what he was doing. When they got a little closer, I noticed that they were despite their difference, identical twins.

As they walked by, I stopped noticing them and started noticing others noticing them. People did the nudge, nudge thing, along with the chin points and, of course, the open stares. All things I am, in fact all disabled people are, familiar with. One boy greeted the stares with an almost brazen attitude, a 'yeah I'm here, yeah the kid next to me is an exact double, yeah, go ahead, take a look at me'. He had an, 'I'm more because I'm different' attitude. He saw his brother, the guy who's appearance made him different, as part of his personal cachet.

The other boy simply refused to look up. He didn't see the stares but you could tell that he felt them, that he was stung by them. When his brother spoke to him about something, he glared at him, didn't answer him. He walked angry. He had a 'I'm less because I'm different' attitude. He saw his brother, who's appearance mirrored his own, as something that robbed him of individuality.

They came and went. In the two of them I saw, essentially, the only two choices someone has in dealing with difference. Either embracing one's difference or loathing one's self. That's pretty much it. I realized that I veer between those two extremes. Well, not so much veer but I find myself attempting to live 'embracing' but cannot stop myself from visiting 'loathing'.

It was instructive for me to see these two boys. They've taken a spot in my mind and captured a piece of my imagination. They make real the choice that I have to make. Seeing that unadulterated pride and self acceptance, walk down the street with both defiance and determination was strong stuff. Seeing that angry, bitter, step, walking like pride's dark shadow, was startling stuff. Attitude takes physical form. It changes twins into polar opposites.

We finished our tea just as a group of young school children congregated around a street vendor ordering food and laughing with each others. Often these kinds of groups scare me - they can be so open in their stares and unsubtle in their notice of me. But I set the cup down and said let's go. I simply let their stares glance off my attitude. I returned fire with attitude. Oddly, they lost interest in me quickly.

Sunday, June 12, 2011

I'd asked myself a question long years ago that was answered only days ago.

The Question: During one of the early waves of closures of institutions in Ontario, I was involved in the planning for a number of men who where moving from Pine Ridge institution. It was an all male facility that housed a few hundred men. Over the course of my work, I saw the institution go from capacity, a place teeming with life and bustle and (finally) hope, to a place of barren walls and long empty corridors. One day, shortly after the last person left, I walked into the building and found myself alone.

In one of the wards, now without a stick of furniture in it, I found an old time out booth. I stepped inside and pulled the door in. I could not close it, it scared me too much, but I had the sense of being locked in. As I stood there, something else happened. I began to feel the fear and the anger and the outrage and the terror of hundreds upon hundreds of men, men who had been locked inside this little booth. Men who had been punished at the whim of others. Men who's outrage at outrageous treatment had been contained in this little box. I felt first their fear, and then, almost a ghostly sense of their presence, the real men, who had been locked in a standing coffin. Chilled, I got out. I stood there not knowing what to do. I wondered aloud, 'What would you all have me do?'

A few days ago, Beverly Herrin, a reader of Rolling Around in My Head sent me a tidbit from her life. I have her permission to print it here. This was the answered, I'd waited for:

Nearly 20 years ago during the of closing of one of the largest state institutions. One of the older buildings – a large “cottage” from the turn of the 20th century was often used as housing for out-of-town staff of community organizations. These community program staff were coming to the institution to meet the people who were going to be moving into their community programs. I know you’ve been to these “cottages” where hundreds of people would live in areas that were separated only by lockers, rows of single beds, bathrooms with no doors on the toilet stalls & large shower rooms where the water temperature was set slightly above room temperature so no one would get scalded, etc.

For a variety of reasons I was staying in this cottage by myself one night. It was huge & old & seemingly vacant except for me. One of the staff from the institution came to check on me late in the evening to make sure everything was going okay. He asked if I knew much history of the building and if anyone had told me the ghost stories about the folks who had lived there over the past 100 years. Well golly, no one had. He went on to explain that he was glad that none of the staff had shared the ghost stories of the “baby cottage” so I wouldn’t be too scared. Yes, it turns out that where I was going to be spending the night alone was, was for many years, where babies & youngsters had lived and died.

Anyone who has lived or slept at an institution knows that it is an animated place 24 hours a day. There is noise, there are lights, there is the sense of movement ALL THE TIME. Even if the buildings are separated by great space the very air seems to be agitated. As I was trying to settle into some sort of sleep I was aware of the untold ghost stories of babies & toddlers who just never had a chance. My own sweet child was snug in her bed 90 miles away. I missed her and I wanted to let her know how much I would do my very best to protect her from harm. I wanted her warmth. As I tossed and turned I realized how much being a mother was at the very core of my being. Finally it dawned on me that I could, at that very moment, fulfill my maternal instinct. Tossing back the blankets of the bed I spoke out to the ghosts, “if you want to come snuggle with me, come on over.” As I pulled the blankets back over me the bed felt different. I have no idea if there were souls who had joined me, but I will tell you I slept very soundly for the rest of the night.

I was very moved by this story of kindness come, not too late, but finally. I wished myself back to that empty ward, to that time out booth sitting akimbo to the wall. I wish I had addressed words of kindness to the memories of the men there. These men were not dead, these men were gone, but I knew that part of them remained here, like a part of all of us resides in trauma from the past. I wish I had not fled them but embraced them, given a comfort to those who needed comfort. I wish I understood that it wouldn't be kindness, too late, but kindness finally.

Saturday, June 11, 2011

That the 'that' isn't clear, doesn't matter much. All that matters is that that 'that' existed at all. I was going into the food court as the two of them were coming out. They seemed impossibly young. This is happening to me more and more as I get older. young people get younger. they were maybe 10, maybe 15, maybe 8, who can tell anymore? To hazard a guess, they were around 10 years, 7 months.

I only over heard one thing. It changed my day. The girl, I hesitate to use that word as one of my female friends, years ago, sent out a birth announcement for her 'bouncing baby woman,' said to her friend, 'I hope to do that one day!' I didn't hear her friend's reaction because I was well past them. I was even further along when what she said, and the significance of it hit me hard. I pulled to a stop.

Those seven simple words, accidentally overheard, reached deep down inside me. All that happened was that a young girl chatting with her friend, walking beside her as she rolled nonchalantly along. But it was what she said. It was those seven words. 'I hope to do that one day.' Seven words that indicated that she owned her future, that she had marked out her own path and had claimed her destination.

Two adjectives, female, disabled, now only modify a none, not a future.

It's been a long journey to get here, I live in the lifetime when my Grandmother did not have the vote in Canada. But, wherever we were, here we are now. A place where seven words of hope and of promise and of power, can be said.

True, we are not at the destination, but as a way station, this will do, for now.

Friday, June 10, 2011

"What are you smiling about?" I asked Joe. I had noticed him smile to himself and was wondering what had struck him as funny.

"I was just thinking of what happened at the airport ..."

Here's what made him smile:

I was rolling over towards the huge long ramp that goes down from Arrivals to Departures. True, there is an elevator but huge long ramps are much more fun. I started down the ramp, my gloved hands working as breaks as I sailed down. I had to bring myself to a stop twice as people made their way up the ramp. It's not often used going up, but today, it was actually fairly busy. I remembered, half way down that after getting off the ramp and out the electronic doors, there was another ramp up to the door leading out to the roadway crossing to the Rental Car area.

'Hmmm' I thought. The last stretch of the ramp is pointed straight at the doors, which are just before the other ramp. I wondered if I could get up enough speed so that I could sail out the doors and up the ramp. it seemed like the perfect challenge.

I pulled myself to a stop and waited. When the area was completely free, I gave a huge push and sailed down the ramp. This may have been the fastest I've ever gone in the chair, I sailed off the ramp and headed to the doors which were closing I knew that once they sensed me they would open again. Now I'm really close and heading fast towards doors that were stubbornly refusing to notice me. I screamed out, 'Doors Oooopen!' They slowly began to slide open and I kept on coming, I knew that if I braked the chair now, I'd tumble forward. My momentum was such that it couldn't just be stopped.

The doors were just wide enough for me to sail through. I hit the other ramp at the bottom and the chair began to quickly slow as it fought gravity on the way up. I made it about half way up the ramp when I was at final stop. I grabbed hold of the railing and waited for Joe, who had watched all of this with a kind of amused horror, to catch up.

All he said to me when he helped me up the rest of the ramp was, 'Feeling like a 12 year old are you?'

Thursday, June 09, 2011

I didn't hear what he said. In fact, I didn't hear them at all. She went off like a siren. There was quiet, suddenly there was noise. I turned in my chair to see what was happening. Like everyone else, I cannot but help look at car crashes. I'd been sitting in a grocery store having a cup of tea at a table while Joe went through to pay for what we'd bought. I looked over and saw him, too, turned and watching.

What we all saw was a mother bent over with her finger in her young son's face. She was talking rapidly and loudly. He was staring at her, transfixed by her anger, his face was flushed. His eyes were glistening, like he was about to cry and only an act of will stopped the first tear from falling. There was no question that this woman was angry, there was equally no question that he was in awe of her fury. In fact, she, a small woman, did seem to grow ten times in height. She clearly didn't care if all of us heard, that was not an issue to her. The issue was that he, her son, would hear her.

"Don't you ever speak of someone like that to me again!!" she firmly told him. She was not screaming, she was 'listen to me young man'ing him. 'How can you use words like that? You used to come home crying because kids called you names. Vile racist names. You know what words do. Don't you remember what happened to your grandfather? Don't you? It always starts with words. IT ALWAYS STARTS WITH WORDS. When I was growing up, people made fun of the shape of my eyes. People called us horrible names, the same horrible names they called you. You know better. Because it happened to you, you know better. You have no excuse for using language like that. This boy, the one you called a 'retard' what is his name?'

The boy didn't answer.

'I asked you what is his name?'

The boy mumbled a name.

'Is he disabled?'

The boy mutely nodded.

'That's worse. That's even worse. You brought shame down on him. Shame because he's different. You will go to school tomorrow and apologize to him, and to everyone who heard you. His name is Kevin!! If you have to call him a name, it will be Kevin.'

She stood up, having been bent over to get into her sons face. It was like suddenly she noticed all around her. She wiped a tear from her eye and said defiantly, 'It always starts with names.'

Then she, and he, trotting shamefaced behind her, turned and went down an aisle. The store took a breath, and the world continued.

Wednesday, June 08, 2011

There are days entered into cautiously. Days where the probability of either humiliation or discrimination is heightened. These fears, which can border on the paranoiac, are real. Getting up into a morning of airports and airplanes is getting up into a morning of fear. I am a fat man. I am in a wheelchair. I am entering into hostile territory. Where seats were made for those with narrow hips, where aisles seem long and where bathrooms are tiny. So I take a breath, remind myself why I do what I do, remember that I love doing what I do, and thus fortified, I get up.

We arrived at the airport in Toronto and were met, in the area for customers with special needs, with kindness and a willingness to help. I have to say that I think Air Canada is exceptional at giving exceptional service to people with exceptionalities. When offered a push to the gate, I refused. I'm much better at long distance pushing now and made it to the gate with little to no assistance. The folks at security were accommodating and, again, kind. I asked the guy who patted me down if he hated doing it as much as I hated it having it done. He said, 'I don't like to have to do this to passengers, but it must be twice as difficult for you. There is a difference,' he said with a wisdom that surprised me, 'between touching and being touched.' I nodded, surprised at how his understanding moved me.

The people at the gate were also terrific. They let me tell them what worked for me and didn't suggest that they knew best what help I should need. What I like is a bit out of the rule book, but the guy nodded and said, 'if that's what works for you, then that's what works for me.' I wondered if he knew, that all night I had feared him, that I had prayed that I'd get someone like him, someone with both ears and a mind. I thanked him and as he turned I looked to see if I could see God's fingerprints on his back ... the one's that pushed him into my orbit that day.

The only blip was when going to get breakfast, we went into a restaurant, empty except one table. The waitress near freaked out and only manged to squeak out, 'Do you want breakfast?' Like she was surprised I ate. We nodded and headed to the table we usually sit at for breakfast. She pointed at a table way off at the side and said I had to sit there. Now, first, I couldn't get there because there was no room to get by all the tables between where I was and where she wanted me to be. I asked why. She told me that I was a fire hazard. I told her I'd eaten there before and not one got flamed. But, no, she wouldn't serve us unless we went to the tables that we couldn't get to.

Frustrated we headed to another restaurant and got breakfast. Suddenly, in front of me, appears ACW (Air Canada Woman) who helped me out once at security. She rescued my wheelchair tools from an eager, and very, very, pompous, security guy who seemed to think that I'd be able to disassemble the plane with my allen wrench. I've seen her since and she's always friendly. We then had a nice chat about accessibility and she told me of having rescued a passenger with a service dog - security wanted to take his harness. We figure that she's got the cause, now she needs the cape. We laughed. It was a tremendous break from the silliness of the waitress.

But, here's the thing, and I don't like it. Everyone was wonderful to me, except her. Everyone treated me with dignity and respect, except her. Everyone listened and helped when needed, except her. We arrived in Vancouver having had a great flight, a flight that was completely at variance with the one I feverishly had imagined in the night.

And yet.

I will remember her, and the restaurant that wouldn't serve me.

I will remember being deemed dangerous to the health and safety of others.

I will remember that act of exclusion even though I was surrounded by acts of welcome.

Arrgh.

How do I change that?

I need to change that.

Cause, a while from now, I'm flying back. And I want a good night sleep beforehand. It's like when I want to change the setting from 'anticipate horror and horrible treatment' to 'anticipate helpful people and pleasant interchanges' my mind screams DON'T TOUCH THE DIAL - prejudice and humiliation will be right back.

Tuesday, June 07, 2011

Today we leave for a lecture tour of British Columbia. It's an interesting trip because they booked the time, had people sign up and then we plotted them into the days - so we'll be going all over the province, north, south, east and west. There will be little time in between to do much else but drive. We've stocked up on books on tape so we should be OK there - and we get to see one of the most beautiful places on earth during late spring, how great is that.

Travelling with a disability brings a different approach to the whole process. The anxiety of travel, experienced by all, is combined with the anxiety of accessibility. We check and double check before we leave and check again as we travel. Every hotel will be called the day before, exact questions will be asked, exact promises will be made. And yet. And YET. There will be misunderstanding and miscommunication. There will be rooms impossible to get into, bathrooms impossible to use. This is now a given for us. And it causes such worry that I begin, now, to feel panic before even getting on the plane.

With the airlines now restricting us to one bag each, we've got to manage to take medical equipment, a c-pap machine for example, and clothing. We figure that we'll now need to do laundry twice as often as before. But we can manage that. Then there is the concern about the wheelchair arriving at the gate as promised - we've had it stolen by another passenger before; and that it's undamaged - we've had the arms almost totally broken off. Every time something goes wrong it adds to the inventory of things to worry about next time. Even when a trip goes smoothly, as some, even many, do; the memories of the bad trips, the broken chairs and the inaccessible rooms linger.

So we leave, we've packed our bags and our anxieties and by the time many of you read this we will be in the air and on our way. British Columbia is home to both of us, we will be near where Joe grew up, where he and I met, where I grew up. We will be visiting cities and people we have known for years and cities and people where we've never been before. We will be making connections and re-connections. And we will be dealing with the need to spontaneously problem solve situations beyond our control.

Over the next few weeks, blog posting may become erratic given my access to Internet and the lateness of our arrival, some evenings we have a seven hour drive after one lecture to get to the next town for the next one. On those days, sleep, not writing, will be a priority. I am, after all, getting older.

But then, the last time I begged off playing a 'throw the kids around game' with a 'I'm getting older and I tired out' plea, Ruby looked at me and said, 'You aren't old, you're ...' and here she started counting off on her fingers ... 'you are human, you are in a wheelchair and you aren't tired yet.' She's right. On all counts. I get tired from the idea of being tired - now it's time to pull up my expectations, and head out the door.

Monday, June 06, 2011

Once again this summer I'll be teaching Summer School, this time at the Holiday Inn Express and 400 and Finch Avenue in Toronto for York Simcoe Behaviour Management Services. I enjoy these classes as I get to know those who attend and spend a bit more time with people who are attending.

Behavioural Approaches, which aims at giving those who attend an understanding of why people with disbilities may do what they do along with some strategies aimed at setting people up for success - both indivdiuals with disabilities and the staff who provide service. Strategies and positive approaches abound!

The dates are: July 7, 8, 14 and 15

Sexuality and Sex Education, a timely topic given Ontario's mandate to provide sex education and to deal positively with sexuality, is a fun and lively series. The how-to of Sex Education is paired with the how-to of establishing healthy agencies.

I have three little impressions for a blog today. None make enough for one full blog but I don't want the impressions lost. So, here, for your amusement and perhaps edification are three little things that I noticed from the past few days:

What's In a Name?

I met a man with Down Syndrome at one of the abuse prevention trainings, who had an odd first name. It's not one often heard, even though it is the first name of a really famous author. I chatted with him about his name and he told me, and told me proudly, that he'd been named after his father. So he had a 'the second' after his name. I can't believe how incredibly this moved me. He was a child born different, with a difference noticeable at birth. He was born during a time when many families equated disability with sin and shame, when many made the decision to hide away what must not be known. He was born into a social lineage of abandonment but was claimed into a familial lineage of pride. I wish I could have met his father. I'm imagining a man of incredible strength with a capacity for love, remarkable.

The X Factor

We went to see the new X-men film: First Class at the theatre. It was full, mostly of men, mostly with comic book ink permanently stained on their finger tips. Me, too, I like these kinds of movies and I'd been looking forward to seeing this one. In this film it is explained how Professor X ends up in a wheelchair. For the first part of the film he is in typical action hero mode. At the end, no I won't spoil it, it is revealed how he becomes disabled. Now the whole film has this 'mutant and proud' kind of message (that becomes a little grating, I must remember that) throughout the story line. I had hopes then, that Professor X's eventual disability would be treated as simply another exceptionality - not a tragedy. Well, not to happen. While they didn't dwell on the 'tragic' nature of his landing in a wheelchair, they did certainly telegraphic the message strongly. Oh, well. I guess some mutants are more valued than others.

A Picture

Joe found a picture, the one that was taken formally at our graduation from university, and we both laughed looking at it. Hopeful faces, me with lots of hair, Joe with big hair. What most wouldn't know when looking at those two faces in the picture was the story behind the picture. We both had our appointments for our individual photo's one following the other. We drove there together and after we'd both had them done, we asked for the final shot to be of us together. The photographer flat out refused. R.E.F.U.S.E.D. No way he was going to 'waste a shot'. There was a real verbal tussle with him. This was a battle that we weren't going to lose. It was our money paying for the photographs, it was our decision as to what we wanted shot. We got the picture simply because, even though he got louder (as I think he realized that we weren't 'best buds' as he'd first thought, we were something more) we simply met his volume with our defiance. I like that picture not because I like revisiting a time of 'hair' but because it symbolizes for me the men we were to become.

So, do any of you have a simple little tidbit you'd like to share, if so, please do!

Sunday, June 05, 2011

Yesterday, as I was shopping for snow globes, the phone rang. I asked the clerk to put my top five on the counter so that I could consult with Joe, who was paying for out tea in another shop. I scooted out into the mall to answer the phone and wait for Joe. I am, indeed, a multi-tasker. On the other end of the line was Tessa. She was calling to tell me that there was a possibility that she'd be able to come home to her apartment for a few hours, maybe even a couple days. She then dove into asking questions.

My disability is, or was, more significant in it's impact on my life than Tessa's was on hers. She now wanted to ask questions about how we'd adapted our apartment. Personal questions about toileting and dressing, questions about a life adapted. I appreciated that she knew that she knew me well enough to ask some deeply personal questions. I answered willing, with as much detail as I thought she needed. Then, on information overload, she said goodbye. Joe arrived. We picked out two snow globes.

I had a deep sense of satisfaction. Being able to answer questions out of personal experience not out of theory or training was a profound experience for me. I knew she knew that I knew. More. I knew that I knew that what I knew, I knew. A couple of weeks ago, when talking with a visiting lecturer about something he'd said during a training he said to me, 'Your disability has been very instructive for you, it's now forming how you think about what we do and how we do it.' It's all true. Disability is an experience, but it's also a kind of 'training' in living adaptively, living creatively, and living differently. It's about living with barriers and prejudices and it's also about living deeply in interdependence and deeply in connection.

This morning, talking with Tessa, she was scared. Really scared. She had gone into palliative care believing that she had only days left. Then weeks passed. Now, there is the opportunity to go home, for hours, maybe even for a sleep. It scares her. I suggested that she try to turn fear into anticipation if she could. She said that she thought that she might be able to do that. She ended by asking for prayers.

We were out when she arrived home. So there we were, knocking on her door. It was answered by one of her friends, Tessa was in bed and sleeping off the exhaustion from the trip. It had gone smoothly, she was thrilled to be home. She was only there for a couple of hours. We tried to stop in again for tea, but she was again napping. It didn't matter. Her visit was to her home. She knew we were over here across the hall. We knew she was over there across the hall.

Saturday, June 04, 2011

From arriving at the front door, we gathered as a community. Vita has a staff retreat once a year, the goal is to get people together, reflect on what we've accomplished and to set goals for the future of the agency. It's way, way, more fun that that sounds. Over the course of the day, I got a chance to talk with several people, those whom I don't manage to run into often. I spoke with one woman about her goals for her future, discussed how she might further those goals with the agency. I chatted with another woman about the importance of making all welcome, all staff, all members. She was quick and funny and warm, all the things you want and need in a care provider.

I had a serious conversation about the importance of an agency living up to the mission of 'safety, respect and community' for all within the organization. The need for tackling larger social issues within a smaller community - racism, sexism, ageism, homophobia, disphobia, ageism - all them came into the conversation. Two young women, one older woman, two gay men, two people of colour, one person with a disability, three people of separate faiths, all of 5 of us, some sharing multiple identities, talked passionately about continuing to create welcome and acceptance and encouragement of all. We talked about how difference, understood, provides everything we need to know about inclusion.

Later I demonstrated my 'pull my finger' pen to a bunch of folks at my table and we all laughed, none of us being above 'fart' humour. Even later, several of us had a passionate, and loud, discussion about what it means to stand with people with disabilities against those, all those, who would treat them as eternal children.

Earlier, I had eyed the celebration 25th anniversary cake, one of the things we were celebrating, and figured out a way to get two pieces. It was a plan of such depth and deviousness that it was bound to work. It did.

Sometimes I think we all spend so much time meeting that we never meet.

Sometimes I think we all spend so much time talking that we never talk.

Sometimes I think we all need to just have time for a chat, the opportunity to spend time discussing the future and the past and NOT the present.

Friday, June 03, 2011

You see with the abuse prevention trainings, I offer to people with disabilities, I get a unique opportunity. I get to sit in the room, up near the front, and watch people arrive. I don't sit right at the lecture desk, that would give too much away. I sit off to the side. Many of the front line staff who bring people in for the training, don't know I'm the presenter, many think I'm another client in the agency. That's OK with me, I get a look at service, unsupervised. Well, service is always supervised by those in care, that that's an almost universally unacknowledged form of supervision isn't it? So, staff are doing what they are doing when they think no one's watching. Well, there is always someone watching, but I guess here, the idea is someone up higher in the 'higher-archy'. So, I get the real thing.

When I started twenty years ago, many people were brought in by angry staff (they aren't allowed to stay) and they'd be pointing to chairs and saying, 'Sit there,' then they'd issue a command or two, 'take off your coat' 'don't slouch' and then they'd warn them, 'you'd better be good and participate.' Then they'd leave. Now, of course, not all were like that, but an uncomfortable majority was. Wow.

So I decided that I'd have me a little celebration when I'd run 10 sessions in a row with no one being ordered to sit in any chair, where conversations would replace demands and where staff were by and large comfortable with their role and with who left and who stayed.

It's been many years since the very first time I had that happen. It was in England, on one of my trips there. The next time was in California, on a trip there. But there was a long time between these two firsts. As time passed, as the approaches to service slowly changed, the number of sessions wherein power was not abused, commanding voices were not used, and staff were pleased, not insulted, that they couldn't attend, started to increase. Twice in the last two years I got up to 8 in a row with fully positive interactions.

Then a few weeks ago, (I'm not counting the train the trainer ones as there are a lot of staff in the room and those bringing people in are very much aware of who is there from the 'higher-archy' and behave accordingly.) But in my last session with people with disabilities, a typical session, with Joe and I and them. It happened. And it happened for the 10th time running.

It took over 20 years for this achievement to happen, but I think it's significant. It means that people are beginning to understand the nature of the relationship they have with those in care and a respect for the job of respecting those in care.

Thursday, June 02, 2011

He had a huge stack of photographs, the kind I like. The ones you can hold. He was showing pictures to one of the staff who had attended the abuse prevention train the trainer class. When he was done, I asked if I could see the photos. I'd just taught him how to say 'no' and figured that now was as good a time as any to practice. But he eagerly came over with the stack in hand.

I love photos.

When I used to consult to families, in their homes, if someone offered to show me pictures, I was right there. How can you be in human services and not be interested in people? Well, he handed me the photos and stood beside me as I looked. He pointed to various people and told me who they were and the relationship they had to him. He had a gentle manner and a wonderful shy smile. Some of his features had been crafted by that extra gene that comes with Down Syndrome but his manner had been carefully crafted by loving hands. This was a guy who was loved. Sometimes, sometimes, you can tell. Disability or not, sometimes you can tell.

And sure enough the photos were of an awards banquet and there were lots of pictures of people with disabilities with families and friends. I saw him with his parents and his sister, they all beamed at the camera.

I don't usually trust photo smiles.

Years ago I worked with a woman, Linda, who had the most wondrous face when she was contemplative. I desperately wanted a picture of her. However, whenever I put the camera to my eye, which was how you did it in those days, she looked up and smiled. Try as I might, time and time again, I have pictures of her grinning at the camera. She never grinned at other times. Ever. She'd had a hard life of abandonment and institutionalization and abuse. She had two looks, one was as if she was mournfully praying for the live she'd had to live, the other was as if she was hopefully praying that the life to come was better. That was it, she didn't grin, except for the camera.

So.

I don't usually trust photo smiles.

However, here today, with this young man, born with the same disability as Linda, I saw something in those photos that profoundly moved me. I saw a family genuinely happy to be there, with their son and brother, to celebrate his achievement. My good heavens, what a journey they'd had. I can only imagine that if, by magic, that photo floated down through their history and into their hands, the hour after his birth, how shocked they might have been. Seeing their future as one that included laughter and celebration and silly photos taken with a serious eye.

And there I saw other families, I saw other genuine smiles and smirks on other faces. They too were celebrating. Here this man stood pointing to people, his mom, his dad, his sister, his best friend, a pretty girl he really likes ... all of them. Mapping out for me a life of inclusion and love and support. Mapping out for me a life lived loved. I looked up and into his eyes, he smiled down at mine, we connected there, understanding what the photos meant, understanding the story they told.

Wednesday, June 01, 2011

Out of respect for his privacy, I will not identify the person I am writing about here today.

As we drove into the city, on our way home from Ottawa, stopped at a red light. Joe noticed a fellow standing on the corner and said, 'Hey, look who's over there!' I looked and for a second didn't recognize the face of a man well known for the work he's done, the stances he's taken, the causes that he has fought, the life he has led. He's a man I've admired for a long time. And there he was. Now out of the spotlight, now gracefully retired, standing chatting with a couple of people on the street. The reason I didn't recognize him was because he was laughing and relaxed. The warrior look was gone, replaced, instead, with the face of a man now simply happy to be chatting on the street with friends.

I remember being little and running into one of my teachers in a grocery store. I was shocked. Teachers didn't shop. Teachers didn't live in the real world. Teachers didn't buy groceries and make dinners. Teachers were, in my mind, folded up and placed in the cloakroom for the night only to be dusted off in the morning. It was kind of like that for me. I'd only ever seen this man in forums where he was at work, where the spotlight fell on him, where he stood and said what needed to be said. I didn't think about him ever just having a weekend, going to the movies, ordering pizza. Surely, surely, we all know, the Queen doesn't poo.

So, therefore, it was a surprise, first, then a delight, to see him standing there, simply being a guy talking to friends on the street. To see him just living life, not fighting fights, not slaying dragons. It was nice to see that he was both bigger and smaller than I had imagined him to be. It made sense, I realized, that he would live in the real world, he fought real battles, he sought out real issues, he spoke from a sense of profound reality. Good people live good and full lives. Of course they do.

But what really gave me pause, was how comfortable he looked in his own skin. His face, much aged since I last saw him, looked like it was worn by a man at peace with himself and at peace with the life he'd led. Wonderful. The world has yet to catch up to his convictions, though I'm sure it will one day. This seemed to be OK to the man standing there. It's like he just knew he had done his part. He hadn't stayed silent. He hadn't fallen into complacency. Maybe this peace I saw, or glimpsed, is his reward.

Disability Pride

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Dedication

This blog is dedicated, in part, to Neuengamme prisoner 28631.

About Me

Joe and I live in an apartment right smack dab in the center of Toronto. I have worked in the field of disability since graduating from university over 30 years ago. I became disabled a few years ago now and use a wheelchair when out in the world. For those interested, most of my books are available through www.diverse-city.com and if you are wishing to book a lecture or consultation you may do so by emailing daveandjoe@hotmail.com

Best Health Blog 2010

Requiem

There are those who have affected the course of my work and my career. I wish to remember them here:

Stella Young

Manuela Dalla Nora

Bob Clayton

Viktor Frankl

Robert Sovner

Marsha Forrest

Terry Haslam

John Money

Susan Tough

Sol Gordon

Winnifred Kempton

I believe that we should speak often and well of those who passed our way and whose lives gifted us. Here in this space I wish to memorialize those whose lived lives in service to those with disabilities.